Friday, December 7, 2012

@MamaBeGood: Autism From The Outside: Experts To Avoid

Autism From The Outside: Experts To Avoid

by Brenda Rothm,
November 12th 2012

Thinking back to Karla Fisher's experience at the autism lecture, I'm reminded that she dealt with an autism expert who used the worst kind of differences - stereotypical differences - to teach his audience about autism. After she objected, he used autism again to dismiss her. And this is the point of the series: there are autism experts who hurt rather than help.

The Dilemma Facing Us As Consumers

Parents of autistic children and autistic individuals have developed certain strengths in response to our children's or our own needs. The first is that we are viscerally aware of prejudicial attitudes about autism. We easily sense the discomfort, judgments, and biases from other people about autistic individuals. Parents have developed a fierce protectiveness of our children. We want the best for them and for them to be the best person they can be. Autistic persons want the same for themselves. At diagnosis, we are told we need the experts. And so we turn to experts.

But because they are medical professionals, we pause our prejudice sensors. These are autism professionals. We can trust them, right? They're the ones who are supposed to have our child's and our best interests at heart. Because we so fiercely want to do the right thing, we want to believe. We want to believe them because they are the autism experts.

Insights from the Interviews

What are the problems with believing the autism experts at all costs? As Landon Bryce pointed out, gay people were treated as medical diagnoses and sent to treatment, an often harsh treatment that damaged their psychological well-being. When Susun Wilkinson talked about Steinbeck believing he was helping Oklahomans by telling their story, she explained how he emphasized Okies' weaknesses at the expense of their strengths. She noted the same tendency for Americans who focus on the negative issues facing us currently, rather than our strengths. A critically important message for autism experts was delivered by Douglas A. Blackmon when he discussed writing about race. Experts should have a clear sense of what are facts and what aren't, what their possible biases are, and what they can and cannot speak to. Doug had this to say about the fact that he is an outsider: "The one thing I cannot deny is that I am a white man. Take me or leave me, there's no avoiding that fact." The one thing that many autism experts cannot deny is that they are neurotypical and, therefore, outside the autistic experience. But many neurotypical experts, used to their own certainty, are slow to recognize this fact. Many neurotypical experts make the mistake of pathologizing differences that aren't emotionally, cognitively, or functionally significant. Some neurotypical experts use therapies that are psychologically harmful. Some continue to stigmatize autistic persons as outside the normal, human experience. These experts are wrong, flat wrong. But is that because they are neurotypical? Doug Blackmon addressed this question when he emphasized the importance of content. It is better that someone revealed an important chapter of black history rather than leaving it undiscovered. And so it is with autism. It is better that someone discovers things or writes things that will help autistic people, rather than leaving those things undiscovered or unsaid. The neurology of the discoverers and writers is beside the point. Our neurology is beside the point because, as Doug noted, there are issues that have common bearing on us all, whether as Americans, as employees, as consumers, as patients, as humans, or as serious people. To paraphrase Doug, there are stories about how some people have been treated, or are treated, or will be treated by other people that affect us all. Somehow, we must be able to talk about these issues with candor and seriousness, no matter our neurology. So when is our neurology relevant? The same way it is with other differences like race, gender, disability, and sexual orientation: When it comes to unexamined bias and the harm it can do. The potential harm is particularly significant when those biases reside in autism experts. No matter how closely associated with autistic persons or families, experts cannot speak for autistic adults or children nor their parents. Autism experts should not characterize autism as suffering, as an overall negative experience, or in any way that pathologizes being autistic or being a family member of an autistic person. Avoid the experts who use tragedy to sell their services.

2. Autism experts who rely on stereotypes.

Autism experts using stereotypes of autistic people are completely unacceptable, particularly because of their position and the vulnerability of autistic persons and families to medical opinion. They should know that portrayals of autistic persons as robotic, unemotional, or lacking in empathy is not only untrue, it's indicative of a deeply prejudicial bias. Autism experts should never stereotype parents of autistics either. We are not a high-strung, unthinking, desperate-for-any-treatment group of people. Many parents are critical thinkers, educated, independent, and aware. We won't laugh with you at the expense of our children or people like our children. If you find an autism expert who uses stereotypes, do not hire them. If you find an autism expert who uses a diagnosis of autism as a means of dismissing an autistic person's opinions or self-determination, do not hire them. If you find an autism expert who encourages an audience to laugh at autistic persons or who asks you to lower your dreams for any autistic individual, do not pay, support, or accept that expert's advice.

3. Autism experts with underlying bias in their work

When autism experts use descriptions like lack of empathy, inability to relate to others, not interested in friendships, or lack of a full range of emotions in his diagnoses, lectures, research, or teaching, those experts are not using facts. They are using assumptions. An autism expert cannot determine whether someone has a lack of empathy or is overwhelmed by empathy and isn't expressing it. An expert cannot know that an autistic child lacks interest in friends or whether the child is actually overwhelmed by other children's noise and motion. When autism experts decide that robots are better teachers for autistics persons, we need to think about the underlying assumptions. Are current methodolgies not working for autistics because they don't support their interests, learning styles, or emotional needs? Do neurotypical providers need to change how they interact instead of creating electronic substitutes? We should remember that autism experts are vulnerable to bias and are especially at risk for ignoring the human side in favor of the medicalization of autism.

4. Autism experts whose words, actions, or services suggest that autistics are somehow permanently outside the norm.

Autistic persons have differences in how they filter input, how they attend to stimuli, how they communicate, and how quickly their emotions oscillate. But these are variations upon being human, the same variations we and others have. Autistic persons experience the same attention, learning, communication, sensory, and relationship issues that many of us do. It may be at a different intensity. But it is not intensely different. When we allow autism experts to define autism as something outside normal, when we allow them to set normal as the goal, we let them define autistic persons as being on the outskirts of humanity. Autism is actually intensely human - with intense input, perceptions, and emotions - not intensely other. We can all recognize a sensory input that we can't tolerate, like nails on a chalkboard, the scraping of chairs across a floor, or the texture of lima beans. We can all identify a time when our attempts at communication failed us. We can all remember a moment when emotions overwhelmed us and we were unable to control our behavior. Our recognition of those times doesn't mean we are trying to dismiss the challenges of autism or to erase it as nonexistent. But we must hold those moments in the front of our minds when an autism expert defines autism as not normal. Examples of the "not normal" theme is the autism expert who tells you that the goal is indistinguishability; that autistics simply don't understand tone of voice; that autistics connect with things, not people; that obsessions should be extinguished; that autistics are unemployed, left out, isolated because they don't know how to fit in. For all of the challenges that autistic persons face, all of them, what are they most at risk for? What are they most vulnerable to? Clinically, it's depression. Socially, it's isolation. So what's the one thing we should never allow an autism expert to do? We should never allow them to spread the idea that autistic persons are outsiders who are unable to experience or understand human emotions, humor, or other people. We should never support an autism expert that claims that an autistic individual will remain outside "normal" human experience unless we use their services or support their mission.
Ultimately, what matters are the things we the people have in common. Our differences exist; they are undeniable. But we are united by our common humanity, our common emotions, our common history, and our connections. Because of our history of intolerance, however, we must be on guard against those autism experts who appear to punish, demean, or erase differences. It doesn't matter if they have binders full of "successfully-treated" autistic persons. Their underlying attitude will poison their work and their audience. Autism experts are not ipso facto scientifically neutral or factually correct. They carry hidden biases just like we laypersons. Parents and autistic individuals require a third strength: a critical eye towards experts. Avoid those autism experts who imply that autistic persons are outside the human experience. We should examine their words and actions carefully when they claim to help, while portraying autistic persons as outside a "normal" experience.

And we should call them on it.

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